Forgive me if this is in the wrong forum, wasn't sure where to post.
In March this year I was diagnosed with a large tumor (6 in, 4.5lbs) on my left kidney. I had no symptoms but had some lower abdominal pain that lasted about a week which caused me to get a CT scan and the tumor was discovered. The cancer had not metastasized so I felt lucky to have found it and I have a spare kidney, so I was hopeful.
I had a full left nephrectomy and they had to remove the adrenal gland as well. Unfortunately in recovery my adrenal artery opened back up (they said they don't know what happened) and I'm lucky to be alive. Probably the worst experience during that time was waking up intubated and wondering what my remaining life would be like if I lived.
When my adrenal artery opened up, causing my blood pressure to crash, sending my other kidney into acute kidney injury. I started on dialysis for the next 3 weeks in the hospital with my eGFR going down to 6. When I finally got home after a month I started unrinating and slowly my GFR increased and I got off dialysis.
Now 9 months later my GFR seems to have stopped increasing and I have been at 30 for the last few months. I'm not sure it will improve beyond that, hopefully won't get worse. I have noticed a drastic decreased in my energy.
If anyone has experience living with a GFR of 30 and things that they found helpful as well as any experience with acute kidney injury and how long your recovery took for your GFR to level out.
Thanks for reading, I know it was a long on.
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Jwbak
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Sorry that I can’t help you with what you’re asking. Just replying to wish you a full recovery. I can’t even imagine how frightening that whole experience was. Sounds like shoddy suturing to me. Pretty outrageous that they said that they didn’t know how it happened. So glad that your remaining kidney has started to do its job. Can’t you ask the specialist how long it usually takes to get full function back? Is your creatinine back to ‘normal’? Do you know if you actually had full function pre-op? Are you seeing a renal dietitian? The less toxins that filter through the kidney the better. Besides the usual low protein, minimal sodium, minimal or no red meat and mainly plant based diet you may also have to reduce other foods depending on your blood results. Calcium, phosphorus, potassium etc. I’m rambling now. Take care
The urologist said he had me open for about 20 minutes with no bleeding before closing me back up and sending me to recovery. Once the artery opened up the emergency surgeon deposited micro coils through the arteries to stop the bleeding so they never opened me back up and got a look in there. I assume that is why they said they don't know. I feel like he didn't do a good job sealing the artery, but I have no evidence either way. My friend is a surgeon assistant and she mentioned my case to her Dr. and he said "It's called practicing medicine for a reason." He wasn't being sarcastic.
It was close though. I had to have various drains put in while in the hospital and I had one nurse recognize my name and was surprised I was alive. She said she was going to text the other nurses and say I lived because I was ashen and they though they were wasting their time trying to save me. She also said my urologist was crying in the corner of the room. So it got pretty messy.
I asked my nephrologist about what I could expect and he just told me we will have to wait an d see. I think in general after a year they don't think it will improve, but I don't think there are any specific guidelines.
Wow. What a lot to process. You still have three months to get to the one year mark. Plenty of time for your kidney to keep healing especially considering your kidney was so healthy pre-op. Wishing you all the best
Oh and pre-op my GFR was about 80. Talking to the nephrologist, assuming no complications, he said you should only expect to lose about 10% function after a full nephrectomy. I guess the other kidney almost fully takes over.
Wow what an experience and you have such a positive outlook after all that. Amazing. As far as living with a GFR of 30, it should be sustainable for as long as you are. Baring no other calamities. Start researching healthy food for CKD. In a nut shell, it is careful consumption of protein. Stay away from red meat as much as you can. East clean, which means whole foods not processed. Stay away from high salt and high additives in your foods. Include lots of fruits and vegetables. Get some exercise when you can.
There is a ton of information out there. But the best first step is to see a renal dietician. They can create a food plan that will be a lifestyle and not a diet.
I kept off of dialysis for over 5 years just with diet and lifestyle changes and that was at stage 4. Best to you.
I have been looking at what foods to eat and how much protein to take in. I did get a renal dietician while I was on dialysis. I'm already pretty much a vegetarian with some chicken occasionally, very little processed food for the most part. I'm giving acupuncture a try as well.
I'm just trying to figure out what my new normal is and functioning in a technical job. I think I have a lot going on at once and I'm trying to figure out what is what. Losing the adrenal gland as well might have more of an impact than I thought, energy and mood wise. Sometimes I don't feel I can focus, other times I'm ok. I assume diet is the most important factor here.
I feel for you and the struggles of kidney disease. I didn't even consider the kidney before and now it's one of the major factors in my life in such a short time.
Yep! Most know my story…I had a stage 4 CKD diagnosis on Feb 8, 1996. ER doc made a huge mistake and drained too much of the ascites I had accumulated b/c of lack of function. On 2/16/1996 I coded in the ER woke up 4 days later in the MICU on a vent…My father was an educator, coach (college and high school and had 2 MSE’s as well as a PhD everyone called him Doc) Dad called the best nephrologist and gastroenterologist in Arkansas and spoke to them immediately by using his title, Dr. Michael Birile and Don Greenway, saved my life…However Dr. Greenway had no bedside manner. They were in the room when I woke up, and Greenway said, “There he is, well that’s good…we are going to use all our tools to try to save you but you’ll never walk out of this hospital, I am just trying to set expectations because I’ve only seen labs like these in my residency days in my Morgue rotation!” Course I had the vent in so I was freaked…Anyway long story short, that was before eGFR at least in Arkansas, first time I had that done was in 2000. But my creatinine was 11.5…. Currently it fluxes between 2.9 and 3.6 which equates to an eGFR of 17-27. I haven’t had a reading about 30 since 2000, in February 2024 it’ll be 28 years…with the normal aging process I knew I’d be lucky to make it to 65. But IF I do, man I have had a blessed like….time finally caught me in 2021 and I had to go in a wheelchair full time, give up the small business I owned for almost 25 30 years…I married the love of my life in 1998.. I’ve got 2 absolutely terrific kids a son 26 and the Apple of my eye a 21 year younger lad mini me daughter…I was blessed to be successful as a business owner so when my kids were 10 and 5 we took a month to travel to a beach like Cabo or Paris, London etc…not trying to brag, just realize that these extra 27+ years (I am a believer as were all the doctors who treated me and we all agreed when I walked out of that hospital 7ish months later it was a God given miracle, all of us to a person). Took me another 6 months to go back to work, then in ‘98 the first of 22 orthopedic surgeries started…but while I do t get out as much as I’d like or need to and have too much time to think, I never fail to see another usually Veteran and usually younger that me missing body parts from 3/4/5,6 tours in a war zone and KNOW it could have been so much worse…truly blessed and if I get that kind of Grace than I know it’s available to all!
I've been around egfr 30-33 for about 5 years. Last year it dropped to 27 after a bout of gout but after 6 month of allopurinol it's now back to 33. The kidney specialist is not particularly concerned, says they will last me out (I'm soon 79). Did notice a substantial drop in energy about 2 years ago but not sure if it was the kidneys or the Lupron that I restarted at that time. Both effect the RBC and energy. Can't give you any advice except keep up some basic exercise. My nephrologist says a course of iron transfusions might help but it sounds like there is no magic pill.
My mum's eGFR pre-nephrectomy after kidney cancer was 36. Following a Nutritional Therapy protocol, it gradually increased and stabilised after ~4y to ~60.
My CKD is from 30 years of dehydration due to a high output ileostomy. I lost my colon at age 30. My gfr was in the 30s when I got a migraine and couldn't drink anything. I was hospitalized with a gfr of 7. They loaded me up with IV fluids, no dialysis. I got a bounce back up to the low to mid 20s. Three years later I'm still hovering between 22 to 26. Since I got under 10 in the hospital I was able to apply for a transplant. I have 3 years down, three more years wait to go. I have a fistula, but due to my constant drinking, and mega doses of anti diarrhea meds I continue to hover above 20. I might even get to the top of the list and go inactive until I drop below 10 again. I'm 61 and work full time. I have anemia from CKD and am always tired. I take a triple dose of iron, but can't get to normal. And I'm not low enough for epo shots or transfusions. Check your iron levels for anemia. A vegan diet is your best option for slowing down the CKD. I personally can't do it, but studies show it helps a lot. Good luck and welcome.
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